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Mysterious shortness of breath: What has helped you?
I will try to make this as short as possible, but this has been going on for over 5 years, so it might be farily long.
Beginning in summer of 2012, I began having shortness of breath (SOB) with no other symptoms. I felt a constant need to yawn, and every few breaths wouldn't satisfy the SOB. I would take a deep breath, and felt like it would get "stuck" before satisfying the air hunger feeling. About every 3-5 deep breaths would satisfy it, only for it to return a minute later.
I got an endoscopy and other tests done, which revealed that I had some esophageal erosion due to acid reflux and a slight hiatal hernia and was diagnosed with GERD. I had always have bad heartburn, so I was prescribed with Prilosec, which I have been taking daily since them. I've tried stopping it a few times but the reflux always comes back a lot worse.
Lung tests and x-rays were normal. Heart tests normal. Blood test revealed a slight anemia but otherwise pretty normal.
I did some research reading forums where someone suggested taking vitamin B-12. Strangely, I took it and the SOB disappeared almost instantly. However, it only lasted a few days for it to return just as bad. I then started taking an iron supplement, which again made the SOB disappear quickly- same thing; symptom returned days later.
After further research, I came across a breathing exercise method called the Buteyko method. Essentially you do a lot of breath holding to build up CO2 and reduce breathing as the theory is that I had chronic hyperventilation causing too much CO2 to exit my body. After applying the method and reducing my breathing, the SOB disappeared after only 2 days and I felt completely normal. I continued the method a few more days then no longer felt the need to pursue the exercises. I was normal for a whole year when the SOB once again returned with some chest tightness. I applied the method again and the symptom went away, this time with a little more effort; after about 3 weeks. I included physical exercise which also helped with my breathing.
After that, I was normal for about 2 years. I mistakenly stopped or at least slowed down exercise and the SOB returned once again. I applied the method and began running for exercise but the SOB kept getting worse. It got so bad, I had multiple panic attacks and the feeling of completely empty lungs with the inability to satisfy it with deep breaths. I had to stop exercise altogether, apply the Buteyko method and do breathing exercises very carefully with very light and slow exercise. This helped, but it took many weeks for the SOB to improve. Then, it was almost normal when over a year ago as I was running, I couldn't get a deep breath to satisfy exercise-induced SOB. I have had SOB continuously since then (a year and a half).
I once again started doing breathing exercises and slowly building up physical exercise, but I can't do any prolonged cardio activity because the SOB gets to a point where deep breathing will not satisfy it. While the breathing exercises have helped, they have had very little effect compared to previous efforts. It seems that every time the symptom returned, greater effort yields few results.
I suspect there is something, some underlying cause that is causing the SOB that has alluded me this entire time.
So for the past few months to a year, the SOB is worse on some days, better on others, but never gone. There's no rhyme or reason or pattern for it. It's just there, sometimes affecting my sleep. I sometimes can't get a deep breath to satisfy it every now and then, but for the most part, a big gulp of air will satisfy it. But it returns seconds to minutes later. It's as though every breath doesn't deliver what it's supposed to, the SOB builds up, and then I have to take a big gulp of air to get rid of the feeling, pattern repeats. My breathing pattern is normal, however. I don't feel like anything physical is happening, but sometimes it feels like my airways and nostrils are slightly inflamed due to allergies, but when I don't feel inflammation the SOB is still there.
Recent lung function tests show normal- I don't have asthma, or any other problems with my lungs. Heart tests are normal though I did have about a two week bout of heart palpitations which came and went. Haven't had any for a while- it just mysteriously started happening then stopped. Blood tests are normal, though tests always show a slight elevation of biliruben which my doc thinks is Gilbert's disease.
I don't have sleep apnea (normal test), bloody oxygenation is normal, heart rate normal.
I recently saw local naturopath (since mainstream docs aren't able to help) who immediately suspected a liver problem when I described my SOB, possibly liver inflammation. He used an electrodermal testing machine to test his theory which did seem to show a problem with my liver and gallbladder. He gave me digestive enzymes and a gallbladder formula to help clear a bile duct clog, thus reducing liver inflammation. He also determined with the machine that I have an egg sensitivity so I've been avoiding eggs.
Been taking this and avoiding eggs for a couple of months, but there has been no noticeable improvement. Everything else is normal. Emotionally I'm normal- no anxiety, depression, etc. The SOB seems to be the only symptom of something, but always comes back worse, until a year and half ago when it came back and has remained since. I feel like I shouldn't have to do breath holding exercises every day just to maintain my breathing well enough to do every day things.
Does anyone have any idea of a possible underlying cause?
2021/2022 UPDATE:
Since my original post about 3-1/2 years ago, a lot has happened, so I’d like to update the post to share with others who come across this what I’ve done since then.
I have maintained a weekly Buteyko method breathing exercise regimen where I do a few of these breathing exercises 3-4 times a week in the morning. This, in combination with daily light to moderate exercise (specifically weight lifting, with 1 or 2 days a week of walking and light jogging), I feel has kept the air hunger symptoms tolerable and manageable. I have mostly good days with some not-so-good days, but doing a breathing exercise and knowing that it’ll get better again helps me get through those times.
I also have sinus inflammation which can exacerbate the symptoms, but I’ve also managed this, which in turn reduces the severity of the air hunger symptoms.
So, while I haven’t found a cure nor is the problem completely gone, I have been able to maintain normalcy in daily life and manage the symptoms through the strategies I described.
This discussion remains active, alive and well through the comments section where others who have similar symptoms have shared what has helped them as well as suggestions for possible solutions to explore.
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@blessed4life @flott118 I have some significant allergies, and when they are not controlled well enough, I build too much phlegm in my lungs and that does cause heart palpitations. I have to watch this carefully because it sets the stage for a bacterial infection if I don't get my lungs cleared. I do allergy shots, and if that isn't enough, antihistamines, and generic Mucinex with lots of water, and I use an asthma rescue inhaler. I do have allergic type asthma, and I get tired when I'm not getting enough air. The trouble with antihistamines (according to my doctor) is that they loose effectiveness with long term use. I also use allergy casings on my pillows and mattress and HEPA filters at home. Cough drops help too because they relax the airways a bit. If you are still searching for answers, you might ask about asthma. I also have worked with my physical therapist because I have thoracic outlet syndrome that affects my breathing because my chest is too tight on one side. She is able to release the respiratory diaphragm and tight muscles around the rib cage.
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1 Reaction@flott118 Have you considered allergic asthma as a possible cause? I will get shortness of breath when allergies cause too much phlegm. If I can keep my lungs clear of phlegm, I feel much better.
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1 ReactionHi @1000016352, thanks for reaching out. There really is not position or certain thing that "triggers" the SOB. It's constant, all day every day. There are varying degrees; most of the time it is manageable and it doesn't bother me a lot. Then there are times it bothers me quite a bit. I notice that when my sinuses are particularly inflamed, the SOB is worse and bothersome. However, when there is no sinus inflammation or allergies, the SOB is still there. Exercise, particularly cardio or if I push a little too hard when weightlifting will make the SOB worse. I know when people with normal breathing exercise a lot, there is a feeling of not being able to catch the breath and they breathe harder to try to catch it, but with SOB, there is a distinct difference; it's not a 'can't catch your breath' feeling, it's that when the lungs fully expand to get a deep breath, the feeling of SOB doesn't go away. It's not satisfied by the deep breath. But anyway thanks for checking it. It hasn't been terrible for the past year or so. It is managed by my Buteyko breathing exercises and moderate daily exercise.
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2 ReactionsAnd actually sometimes I notice a slight difference when laying down. Again, this is only occasionally but when I lay down to sleep in any position, the feeling of SOB can be a good degree worse than when sitting or standing. So I have to sleep sitting up on the couch about 2-3 times a month when I feel like I can't bear the SOB when lying down.
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1 ReactionHi @merpreb Merry - thanks for asking....my wife is doing fine for the most part...on a targeted therapy with infusions every 3 weeks, following Mayo doctors determining (via molecular study) that her cancer is in the lung, but is indeed an Erbb2 mutation...HER2...a breast cancer mutation in the lung! Even Mayo dropped the ball and didn’t check the biopsies from her surgery close enough. So after surgery...then chemo, they put her on immunotherapy using Opdivo...only after her cancer continued to grow, did they do the study and made the determination of an Erbb2 mutation!!
Her’s was indeed hard to diagnose...it took nearly 2 years of seeing the perpetual string of local pulmonologist, gastroenterologist, bariatric surgery...and finally being sent to a thoracic surgeon who wanted to remove a lobe of her lung with open chest surgery! Even then, he was not convinced she had lung cancer, but the lobe was not functioning and needed to be removed! Hah!
That’s when we finally packed our bags and went to Rochester.
It all started in 2013 with several bouts of pneumonia, 4 bronchoscope procedures by a pulmonologist...then after more pneumonia they tested her for GERD which the pulmonologist seemed convinced from the beginning was the problem. They then convinced us it was GERD, even though the tests showed inconclusive...and performed a Nissan Fundoplication on her!???!
Sounds difficult to diagnose to me!
Mayo finally in May, 2016 (after receiving all her records), scans, biopsies, etc determined the growth in her lung was an adenocarcinoma with lepedic growth (slow and hard to detect). A VATS Surgery procedure removed a 12 cm well differentiated adenocarcinoma and a 5 cm adenocarcinoma...not a nice way to spend Mother’s Day!
Thanks again for your concern Merry, but I respectfully disagree - NSCLC IS INDEED OFTEN DIFFICULT TO DIAGNOSE!
If you were to access the lung cancer registry you will quickly see from their studies the large % of lung cancers that went undiagnosed with similar difficulty.
Here is a link...https://www.lungcancerregistry.org/
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1 ReactionHi Jennifer, I was tested for allergies a couple weeks ago. Only things that came back was dust mites and candida albicans that i was allergic to.
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1 Reaction@burrkay- I agree that your wife's case was difficult to diagnose and I am a part of that registry. The doctors dropped the ball with testing and this is why many cancers go undiagnosed. I miss spoke about it's ease because with so much research being done in the last yea, esp. there have been more and more mutations being found. Hopefully there will be treatments for them all. Treatments don't have to be cures. My sub type acts like a chronic lung cancer. This is fine with me.
Your wife's doctors were not complete in their medical protocol and hopefully in their peer reviews they will have been well cut down and have made a dent in doctors paying more attention to what is being found now- more and more mutations. Mutations are what cause the difficulty.
How is your wife doing day to day?
Thanks Merry...yes, we had several in our local medical community who dropped the ball...however, my fault for not paying better attention.
My wife is doing very well...back to Mayo for a consult end of May. My concern is with the potential side effects to all these infusions...28 months now (every 3 weeks)!
I must say, the Mayo oncology docs (and staff) have been superb! We are blessed to have gotten to Rochester for her initial care...and now the care in Jacksonville.
How are you doing? Remarkable that you have had four bouts with lung cancer! Are you still getting treatments?
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1 Reaction@burrkay- I'm doing very well right now. The only treatments I get is when I have an active cancer and it's usually SBRT- A highly focused radiation. Thank you for asking.
Many many hundreds of CT scans for me over a period of 22 years. But I have never heard of anyone dying for exposure from CT scans.
Here is my blog if your wife or you want to read about my journey: https://my20yearscancer.com/
Did I already send this to you?
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2 Reactions@blessed4life your symptoms found very similar to mine! I just saw a pulmonologist and my pulmonary function tests came back normal, along with my chest X-ray. So I guess it’s safe to rule out an actual issue involving the lung. My mom also has anxiety, and I’m sure anxiety plays a role worh my issues as well. I just really want to rule out a medical problem before I attribute my symptoms to just anxiety.
Did you notice improvement after taking loratidine? Is this a medication you take everyday? Also, did the results from the holter monitor show anything? Thanks for all of your advice and help, hopefully we can all solve our SOB issue!